10. Lung Cancer Treatments: Navigating Side Effects
N.B. AstraZeneca has provided a grant towards this independent project and has had no involvement in its creation or organisation.
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Chemotherapy accumulates in the body, and understanding its effects can shape the treatment journey for cancer patients.
In this episode, Rachel and her new guests dive into the side effects of lung cancer treatments, focusing specifically on chemotherapy and tyrosine kinase inhibitors (TKIs). They emphasise that the first chemotherapy experience can often indicate how future treatments will go.
Listeners hear firsthand accounts from guests Sarah, Maria, and Natasha, who share their personal stories about battling lung cancer and managing side effects.
This conversation aims to provide insights and reassurance for those currently undergoing treatment or about to start, highlighting the importance of communication with healthcare teams about any side effects experienced.
Transcript
Chemotherapy accumulates in your body.
So I also used to say to all my patients, and I'd say to people out there, your first chemotherapy is going to be pretty much a good indication of how the rest of your treatment's going. Hello and welcome to Breathe Strong. I'm your host, Rachel, and this is our final episode of season one of Breathe Strong.
So I hope that you've enjoyed it. In today's episode, we're going to talk about lung cancer treatment side effects.
Our last episode we focused on mesothelioma and today we're going to focus on lung cancer side effects. Now, I'm completely delighted.
We actually have a whole new team in the studio with us today and the reason for that is that our lovely Charlie is her birthday. And so happy birthday, Charlie. So she's actually off getting ready for some fun, fabulous, big party tonight.
We also send a big shout out to Mel, who sadly has got a nasty cold. So we miss you, Mel, and we wish you all the best and we look forward to seeing you very soon.
So before we start, I'm going to introduce you to my new team. So first of all, I've got Sarah. Hi, Sarah.
Sarah Li:Hi, Rachel. Thanks for having me in.
Rachel Thomas:Do you want to tell us a bit about your journey? Your.
Sarah Li: itive lung cancer that was in: ng progression to my brain in:For that as well and also stereotactic radiotherapy. Wow. So quite a few.
Rachel Thomas:Okay.
Sarah Li:Lots treatments. Okay.
Rachel Thomas:Thank you for coming today, Sarah.
Maria Elliott:Thank you.
Rachel Thomas:And hello, Maria.
Maria Elliott:Hi. Thank you so much for inviting me.
Rachel Thomas:You're very welcome. And can you tell us a bit about you, Maria?
Maria Elliott:Yeah. I was first diagnosed going to the hospital. I had no symptoms.
I went for something else and I got told I'd got a small tumour in my left lung lobe and I went straight through to thoracic. Was going to. Oh, it's all going to be cut away, Maria. Don't worry about it. Didn't even get a stage or anything at that point.
And then unfortunately, I woke up with the surgery had been abandoned and I was stage four.
Rachel Thomas:Oh, my God.
Maria Elliott:Because it had gone to my pleura.
Rachel Thomas:Right.
Sarah Li:And around my heart.
Rachel Thomas:Right.
Maria Elliott:So, yes, I'm stage four. But I have been like that for three and a half years now. And I'm on ozimertinib for all its sins and all its wonders.
And, yeah, I'm just living each day as it goes.
Rachel Thomas:Brilliant.
Sarah Li:Thank you.
Rachel Thomas:Thank you, Maria.
Sarah Li:Thank you.
Rachel Thomas:And we have Natasha.
Natasha Loveridge:Oh, thank you so much for inviting me today.
Rachel Thomas:You're very welcome. And do you want to tell us a bit about you, Natasha?
Natasha Loveridge:Yes, I'm Natasha and I was diagnosed with stage 4 EGFR positive lung cancer about 3 and a bit years ago now. It's been quite a journey.
I've been treated well, I've been on ozimertinib, which is tki, for the whole time, but I did have progression in my brain about a year ago, so I had gamma knife to my brain and I have also more recently had my left top lobe removed whilst being on ozimertinib.
So as the first, I'm really proud to say this, I was the first female in the UK to have my lung removed whilst being on ozimertinib and having progression to the brain.
Rachel Thomas:Wow.
Natasha Loveridge:So, yeah, so it means the treatments for lung cancer is like, they're changing so quickly and so rapidly.
Rachel Thomas:Yeah.
And I think that's really interesting to note that our three team members here today, you know, they've not just been on one treatment, it's been several treatments together and they're still here, which is brilliant because, as you know, when I first started in lung cancer and was looking after EGFR patients for the first time, you know, it wasn't as positive as it is now.
Even then, we were still excited by finding EGFR positive lung cancer because historically some patients didn't do well on chemo and we couldn't work out why. So, you know, we're going to look at that today. We're going to focus mainly on EGFR positive lung cancer patients today.
So before we start, I just thought it might be interesting because we now live in an era where lung cancer has so many more treatment options. There are tyrosine kinase inhibitors, there's chemotherapy, there's all different types of radiotherapy.
As Natasha was saying, there's gamma knife radiotherapy, there's sabre, there's targeted radiotherapy, we have surgery, we have immunotherapy, but all of these treatments naturally come with side effects. And this episode, we're going to really just focus on two of those treatments, which is tyrosine kinase inhibitors and chemotherapies.
Now, you might be thinking, most of you, we talk about TKIs and we don't actually really understand what TKI means. Means and that means tyrosine kinase inhibitors. That's what these drugs are. So what is tyrosine kinase?
Well, it's an enzyme which internally switches within the cells that control functions such as growth and cell survival.
Now, in cancer, genetic mutations or an abnormal gene activity cause these enzymes to become overactive, leading to uncontrolled growth of cancer cells. So the inhibitors inhibit, stop or slow down that from happening. That's what they are. They're an oral drug. They're usually taken once a day.
And they have changed the face of how we look after our lung cancer patients.
We also know that recently there has been developments where we have been combining chemotherapy with TKIs, and there have been clinical trials to look at the effectiveness of this. And actually they have been very positive.
So we're growing and we're learning all the time about how we look after our patients and keep them well and alive for as long as possible. But as I said, we know there are side effects with these drugs and some of these, but not, you know, it's not a.
The full picture, but some of them can be fatigue, skin rashes, like nail changes, actual rashes and itching on our skin, diarrhea, changes in our taste, which can reduce your appetite, make you not want to eat very much, then you lose weight, nausea. These are just a few of some of the side effects that we see from these drugs.
So what we're here to talk about today is for those, this is for people who may be on treatment or just about to start treatment. It's interesting to hear from other people what their life experience has been. So just to open up what's been your experiences of being on drugs?
I mean, maybe let's start right from the beginning when you were told you were going to go on a tki, what, what first crossed your mind? Did you have understanding what the heck that meant? Natasha, you'll know, you'd say maybe you could start then.
Natasha Loveridge:So when I first of all got diagnosed, the analogy that my CNS used was she said, imagine that the. Imagine a tree, okay, Your main primary tumour is the trunk and then your metastases are the branches.
Your TKI is going to hopefully chop the tree at the bottom, at the base so that everything's withers away. Okay, we talked and so it's like a systemic treatment. She did talk briefly about the side effects.
But I think the one thing that I would say to all the listeners out there is please don't be scared about reporting side effects. So after I'd been on Ozimertinin for a couple of weeks. I developed the rash.
Rachel Thomas:Right.
Natasha Loveridge:And I was so scared about calling it in. And it was. It started off in my feet, ran up my legs, very, very itchy, swollen. And I lived with it for a couple of days.
And then by the time it started getting into my eyes and so on, it became unbearable. I was so, so scared that they were going to take the TKI off me.
Rachel Thomas:Right.
Natasha Loveridge:That I didn't want to call in.
Rachel Thomas:Okay.
Natasha Loveridge:Because I thought I could put up with the rash.
Sarah Li:Yeah.
Natasha Loveridge:And putting up with that was better than coming off. Yeah. Anyway, so I did. I ended up phoning it in because it just got unbearable. Got called down to the oncology unit. Went down to the oncology unit.
They literally gave me some antihistamines, and it cleared it up.
Sarah Li:Wow.
Natasha Loveridge:And so something, you know, the fact is that a lot of these side effects are manageable. And I think it's saying to people who may be just starting out on a tki, don't be scared.
You know, don't be scared of calling in, because actually a lot of these, you can have treatment to deal with those side effects.
Rachel Thomas:And maybe then as nurses, we should actually. And I mean, I used to say to my patients when I worked at the hospital, don't be scared. Tell us, you know, early.
If you tell us early, we can treat it. We probably won't need to even interrupt treatment if you tell us early. But don't be worried. We're not going to stop treatment.
That's the last thing we want to try and do is stop the treatment. But I think maybe we need to be a bit more perhaps to the point about telling our patients that so that they don't feel scared.
Natasha Loveridge:Yes. Making it really explicit about. The fact is that you may experience these side effects. However we can deal with those, just let us know.
Rachel Thomas:Yeah, yeah, that's a really good point. That's a really good point. And, Maria, what was it like for you? What was your experience?
Maria Elliott:Well, obviously, I had to recover from the operation. So I was about four weeks before I started it, and I think I was just numb. I say this a lot. I shut down. I didn't know because every cancer.
I've had a breast cancer and skin cancer, and everyone has had the. Where I've had the operation, it's been cut away, and I've had adjuvant therapy, and that was it.
And then when waking up to stage four, I think it took me a while to get used to that anyway, then eventually I was going straight on the chemo, the blood test had not come back to give me a mutation.
Rachel Thomas:Okay. Yeah.
Maria Elliott:So I was actually sat in. The consultant, she was on holiday and she'd asked somebody to come specifically and to let me know that it was okay.
You've got the best cancer gene mutation. And it went. And I didn't hear any more apart from a tablet.
Sarah Li:Can I ask a question about that?
Maria Elliott:Yeah.
Sarah Li:Did that help when they said it's the best cancer?
Maria Elliott:No, not really.
Rachel Thomas:That's quite a thing to say.
Maria Elliott:Is it?
Rachel Thomas:There is no best cancer, is there?
Maria Elliott:But, yeah, they did say that to me, but I think I grabbed onto that and then. But they said it only works for 18 months.
Rachel Thomas:Oh, right.
Sarah Li:Statistically.
Rachel Thomas:So they gave you good news and then took it away.
Maria Elliott:Yeah. So I remember going then to get my drain removed and just crying with my CNS and saying, I've only got two years, I've got two years.
I've got to fit everything in. I've got to get well, you know, that kind of thing.
Rachel Thomas:Oh, my God.
Maria Elliott:So I don't think I properly listened, is my answer to your question, Rachel. I don't think I listened. I don't think I took anything in. I just went along with it and just took the tablet.
Rachel Thomas:Wow.
Maria Elliott:And then what I would say to the listeners is, don't lose heart because these side effects, they come in waves and it changes so often.
You know, one day you're absolutely never off the toilet, the next day you've got nail infections, the fatigue hits you and this is all really in the beginning and then you've got to sort out when you take it. I can't take it in the morning because I'm asleep by 12 o'. Clock.
Natasha Loveridge:Yeah.
Maria Elliott:It really knocks me out. I don't think it's a drug that knocks me. I think it's the fatigue hits or something.
So from the beginning, I've always had it on a night, but, yeah, I was completely blindsided by the whole experience. And I don't think I really got used to the thought that this pill was going to save my life, but obviously I learned so much.
And you listen and you learn and you get out there and you keyboard warrior.
And so I got a lot of information, but they just gave me a photocopied from macmillan, from Ozzie Mercenary, and that was all they gave me at that time.
Rachel Thomas: nteresting is that I remember:As a nurse, when these new things come along for your patients. And you think for me, it was like my patients were all dying.
And to have anything, anything hopeful for patients, but also for the nurses and doctors, this is like, you know, we're celebrating hope, isn't it? And I can remember after about two or three months of working at Guy's hospital saying to.
I worked with the most brilliant professor saying, I think nurses should do those clinics, you know, because we would see our patients every time, rather than you coming and having to tell your story to a different person every time. So we started running nurse clinics.
We were one of the first hospitals in England because there was a hospital in Scotland that he was our mentor for nurse clinics on TKIs.
And the difference, I think, with the nurse looking after our patients, because we spent that time, all our new patients got an hour with us to talk about, this is your diagnosis, but this is what we're going to do about it. These are the side effects.
And we would give them information, little diaries, but then we would phone our patients seven days later because we knew that was probably when things were going to kick off.
Maria Elliott:Honestly. Massive shout out to the LCNSes because they've got me through so much. They're so approachable. And my oncologist as well, I'm so lucky with my team.
And it was down to my Cheryl LCNS nurse who said, oh, Maria, while you're waiting, let's just go do this blood test.
Rachel Thomas:Right.
Maria Elliott:And she, totally off her own back, took organized that for me because I hadn't seen a consultant by that time. And that's what came back on the day of my chemo to say that I was EJFRX on 90.
Rachel Thomas:Wow.
Sarah Li:For my blood test.
Rachel Thomas:Yeah, yeah. You can do this blood test called cdc.
Maria Elliott:Was it to Germany or somewhere?
Natasha Loveridge:I had the same one you did.
Maria Elliott:Massive shout out to them.
Rachel Thomas:Yes. So this is a new development that we're growing in our expertise. So we know that cancer cells break off from the tumour and circulate.
So a circulating DNA blood test is what it is. And in the blood test, they will look for cancer cells and they can then diagnose from those cancer cells what type of lung cancer you have.
So this is, again, you know, this all so exciting to see these things happening. So with screening and then going on to diagnose, we're getting faster. You know, you were talking about having to wait.
You were almost about to start chemotherapy because you'd had to wait so long for those. Yeah, that test to come back. We're improving all the time. So that's great. And Sarah, what's been your experience?
Sarah Li:I suppose if you're asking about my experience of ozimertinib and coming into that, it's quite different because I didn't have ozimertinib at my diagnosis. I was prescribed radical chemo radiation because I was stage 3B.
Rachel Thomas:Right.
Sarah Li:And so that's. At that point exactly like Maria was saying, you just. You can't. It's like a huge psychological thing that you have to go through.
You've been diagnosed and you have to immediately face your own mortality. That's kind of what happens. And it's what I found when I was diagnosed and then met my team. I also have a really wonderful team at UCLH and the cns.
There was saying to me, we have a treatment plan, we have a treatment. And just those words I hung on to. Yeah, because it was. A really good friend of mine had said, look, you're now walking in the right direction.
And that really helped, that understanding of, you know, I wasn't even feeling that ill when I was diagnosed. I had a cough and it was get. It was getting worse, but it wasn't enough.
To think I'm gonna, you know, to think it was lung cancer was just extraordinary. So then when, of course, you're diagnosed, it's terrifying. And you just think it's growing, it's growing your mind, you can't see it.
You don't know what is happening. So I was really desperate and keen to start treatment as soon as possible.
And, I mean, when I was diagnosed, I was 40, so I was still childbearing age, let's say. And so I had. This is also why my hospital were amazing because they considered this fact, considered whether to freeze my eggs.
Rachel Thomas:Okay.
Sarah Li:And I just wanted to start treatment. I thought, I can't be a mum if I'm not here. Do you know what I mean? It's just all these thoughts.
It's really scary thoughts you have to think of so quickly.
And I'd done a bit of investigation and found that there was a drug called Prostat, which I think breast cancer patients get injected into their belly. And it protects your ovaries, really. Yeah.
So when I then went to chemotherapy, well, I spoke to my team about it and they were like, yeah, yeah, let's. Let's give it a go.
So I had this injection every time I had chemotherapy and that then I, you know, I was going through so many side effects during chemotherapy that, you know, just a jab in my belly. I didn't know what was doing what. So it was, you know, it kind of great. It was giving that, it was protecting that.
And at the time when I was diagnosed, I was, you know, the treatment was curative intent.
Rachel Thomas:Yes.
Sarah Li:So then six months later, after six months of, you know, after my chemo radiation, I had immunotherapy defalumab. Because there is. It's a bit of a difficult situation with. With nice and with how different staging works.
But after you've had chemo radiation at stage 3B, they don't prescribe ozimertinib. Yeah. It's like the one stage that doesn't get ozimetinib. It's very odd. So they sort of. My. My oncologist was great.
We had a conversation about it and he said to valumab is like. Like belt and braces kind of thing.
Rachel Thomas:Yes.
Sarah Li:So let's do that. So I went through that for six months and then did a reg. Like a routine scans, including a brain scan.
And, you know, after six months, they saw a mass on my. On my brain. So the cancer, therefore, immediately at that point was restaged.
And I changed my team because I was clinical oncology and I went to medical oncology. It was. To me, that day was as bad as diagnosis. It was just like a unbelievable day.
Maria Elliott:It's trust, isn't it, in your team?
Sarah Li:Yeah. I was terrified to. I was like, but I know this doctor and he's been through everything with me. How can you leave me? Yeah, it was really scary.
Rachel Thomas:It's like a breakup, isn't it? Because you've trust that person with your life.
Sarah Li:Yeah. They're like, you know, they're kind of your God, right? You just do everything that. And he was a. He was a lovely. He is a lovely man.
And he, you know, had my back and. And then he just like, sorry, this is now your medical oncology team. And I was. I was angry at my medical oncology team.
I was like, well, I don't want you. I don't. I don't want you.
I want to stay with this person and this team who's been, you know, who's looked after me and seen me through the kind of roughest of times. You know, a year and a bit later, I'm my. My medical oncology team are like my heroes.
Rachel Thomas:And I love them.
Sarah Li:I hug them whenever I see them. But at the time, it was like, when you're facing fear like that, you need something to really ground you.
And in the past, it always been my oncologist. He'd give me good news, he'd give me bad news. Just been in the room for all of it.
So then sort of being shipped into another room and another doctor was quite a lot to process. And then that, that day they gave me ozimetinib, right?
So it was like I knew about ozimetinib, and I knew about it even before I started chemo radiation because it was known as the miracle pill. You know, you can live a full life with it. You've got EGFR positive. And I have to caveat this as, you know, like my EGFR positive.
All of our EGFR positives are exons that respond to ozimatinib. Not everyone's does. And There are other TKIs out there, but not for everyone. So we're within having EGFR positive.
We're also lucky to have breast cancer. The best cancer within the breast cancer.
Natasha Loveridge:Maybe you should say that, because when I first got diagnosed VGFR positive as well, my CNS phoned me up and said the same thing.
Rachel Thomas:Really?
Natasha Loveridge:And she said, oh, it's okay because we can put you on ozimertinib. And you're lucky because I think it's that lifeline, isn't it?
Rachel Thomas:It is, it is.
And also, you know, like you were saying about being on chemotherapy and radiotherapy people, and we talked about this this morning about this fear of chemotherapy that you're gonna lose your hair, you're gonna look like a cancer patient, you know, it's gonna be horrendous. You're gonna. Over the show,.
Natasha Loveridge:You know.
Rachel Thomas:Well, come back to that, Sarah. And I remember Charlie saying in one of the first podcasts that she was in the bath and.
And Max was banging on the door to break this incredible news that actually you're not starting chemo because you're going to be on this oral drug. And Charlie was like, yes, in the bar. And it was a celebration for her because it was, no, I'm not going to have to go down the chemotherapy route.
Natasha Loveridge:I think we probably all remember taking that first tablet.
Rachel Thomas:Really, do you?
Natasha Loveridge:So I picked mine up two days after we found the brain mets. I was supposed to be starting chemotherapy as well, but then they found the brain mets. I went straight onto ozimertinib.
And I remember picking it up two days later, sitting in the car in the car park at the hospital, just unwrapping that first tablet. And I remember as I took that first tablet and that first swig of water, just thinking, just cure me, just cure me.
And you know, and Then also you look at this teeny weeny little tablet and you think, how can something so small do such an amazing job?
Maria Elliott:It's incredible, really.
Natasha Loveridge:And I know again, it's like you said, not everybody's Exxon.
Maria Elliott:No.
Natasha Loveridge:And also of course some people don't simply, it doesn't work for them as well. Whereas some people, you know, they may be able to stay on ozimertinib for years, other people unfortunately might only last for a few months.
I feel like I'm one of the lucky ones. But yeah, it's incredible this little tiny little tablet.
Rachel Thomas:But yeah, we're making advances and this is what's so wonderful in this country. We're very lucky that we have some of the best oncologists in the world.
In our country there are still, you know, I've recently been to the British Thoracic Group conference and it was just a buzz with I think 3,000 plus health professionals all there for one purpose, which was to find out what going on in the world of treatment to improve our patients lives. It's amazing.
But just taking a step back, Sarah, because you talked about, you mentioned just very briefly there about the chemotherapy and, and I get the feeling it was awful for you. Well, what, what, what exactly was that like?
Because on top of the chemotherapy, you also had daily radiotherapy for six weeks, Monday to Friday, didn't you?
Sarah Li:Yeah.
Rachel Thomas:Can you tell us a bit about that?
Sarah Li: d chemotherapy twice. Once in:And yeah, I think the first time I had chemotherapy, it is an incredibly surreal experience. You're sort of in.
I remember lying in the hospital bed and you have this, I had a cannula in and all these drugs arrive and you, you just can't believe that you're the one having chemotherapy. You're just like, how is this me? You know, it's just like, it's, it's, it's, it's a very unlike out of body experience, I would say. And then.
So my first sort of round was three, three rounds every three weeks. And after the second round I then started the radiotherapy. And the first drugs they had was Cisplatin and vinaralbin.
Rachel Thomas:Right.
Sarah Li:So one platinum doublet. Is that what it's called? Platinum doublet?
Rachel Thomas:Yeah. Platinum doublet, yeah. They use these fancy words.
Sarah Li:Sounds quite nice in that paper. It's not very nice.
Maria Elliott:It sounds like it's the platinum.
Sarah Li:Yeah, yeah, exactly. Gold standard.
Maria Elliott:Gold standard.
Natasha Loveridge:That's what it meant.
Sarah Li:Yeah. Oh, well, it's because it's like got platinum.
Rachel Thomas:It's metallic.
Sarah Li:Yeah.
Rachel Thomas:So a lot of chemotherapies have a metallic element to them.
Sarah Li:Yeah. And the cisplatin is the one with the metallic element. So I mean, the first round, you just don't know what to expect.
And I remember always coming out. Oh, I came out that first day and I have to name drop here because it's so, again, so surreal.
When I was in my ward on the first day, they had these signs up for going to be some filming and I met filmmakers. So I was like, oh yeah, that's fine. You know, it's probably just a charity thing or whatever. Of course. So I had. We had to sign something.
And then there was a bit of a buzz around the ward and like it was really busy and there was these bounces on the, on the door.
Rachel Thomas:Wow.
Sarah Li:And I was there thinking these drugs are so important that people can't come in like, okay, I'm you know, being looked after here. Have you signed an NDA? Like they're looking after us in like really incredible fashion.
Natasha Loveridge:Yeah.
Sarah Li:We had like strong men on the door. And then frickin King Charles walked in.
Rachel Thomas:No.
Sarah Li:Yeah. The first day of my chemotherapy was.
Rachel Thomas:He knew you were there, got called in.
Natasha Loveridge:That's cause it was platinum. You said platinum.
Maria Elliott:Oh my God, I'm gonna ask for that.
Sarah Li:It was just like as if the day couldn't have been more unbelievable. It was then that. So that was kind of a buzz. And my partner at the time, he was there and he was like taking photos for everyone.
And it was all just then about King Charles. What about me?
Natasha Loveridge:In a second.
Sarah Li:I'm the patient now. And it. But it was kind of. It detracted from it.
And you just, in these moments of like, you can't believe this stuff is happening to you, you just have to laugh and like, you know. So the day itself of chemotherapy for me was all. I was always on a bit of a high.
Like you're also given a lot of steroids, you're given a lot of like painkillers. And then it was that, you know, that night was. For me, the nights were when it kind of hit.
Rachel Thomas:Right.
Sarah Li:I had very bad nausea, Very, very bad nausea. Constipation. Right. And they were the two kind of worst side effects. And then after the second round kind of got worse.
And then the third round, I ended up in A E that night.
Rachel Thomas:Wow.
Sarah Li:Just with. I wasn't able to hold anything.
Rachel Thomas:Okay, okay.
Sarah Li:But I I actually think that that was also because I was having radiotherapy. I was. I couldn't eat and I couldn't, you know, swallow. So there was a lot going on. But I don't want to put people off chemotherapy, actually.
ad chemotherapy the second in: Rachel Thomas:Yes, it is, yeah. Because cisplatin actually makes you sick. So we know from. We didn't really use it very often. In my trust, I worked at. Because of the sickness.
Young women suffer more with sickness with cisplatin than older people. And one of the things that we were advised were you should always ask your patient if they'd had children, did they have morning sickness?
Because if they had morning sickness, they're going to get chemo sickness.
So we would counsel our patients very early on about nausea because often nausea can be one of those symptoms that's under treated but can become psychological.
So I've had patients before where they've not been on chemo for a while, but they've come into hospital and coming into hospital makes them vomit because the psychological impact.
So I was used to think the one symptom I need to absolutely get on top of is nausea because it becomes, I think the words intractable chemotherapy accumulates in your body.
So I also used to say to all my patients and I'd say to people out there, your first chemotherapy is going to be pretty much a good indication of how the rest of your treatment's going.
If you feel sick on that first chemotherapy, they possibly need to change your antiemetics and give you more antiemetics, different types, because many different types, and monitor you really closely for that so that it doesn't get to that stage. Did you try any alternative like ginger or anything else? You're at home.
Sarah Li:Yeah, I had. I did try. I'm very kind of into homeopathic medicines to support treatment. And yeah, I tried ginger. I drank a lot of water when I could.
I'm trying to think and I think the more experienced I got with chemotherapy, it is almost about the pre. To kind of prep for. For it.
Maria Elliott:I was wondering about the bowels, you know, with the constipation. Can you prep pre to the. Yeah, you know what I mean? So it's like lectalose a few weeks. So you.
Sarah Li:Yeah, that's. That is what I started to do the second time around. Maybe the drugs were not cisplatin and not as heavy, but they were still heavy. Platinum doublet.
Rachel Thomas:Yeah.
Sarah Li:And so I started because I really got bad constipation. Really bad, which is dangerous as well. And so I would have a lot of prune juice beforehand. Now I can't drink prune juice. Yeah.
Rachel Thomas:Really? That's interesting, isn't it?
Sarah Li:Yeah.
Rachel Thomas:See, this is how important the psychology and well being is, isn't it?
Sarah Li:Yeah.
Maria Elliott:It smells sound, sight, isn't it?
Rachel Thomas:You remember? And it's held there.
Maria Elliott:Yeah.
Sarah Li:Like respect. Prune juice. But not for me.
Maria Elliott:Yeah.
Sarah Li:Right. Now, unless I need to do that.
Maria Elliott:Tinker, tailor, soldier, Sail away. When we used to do that with prunes. So you'd eat the prune and when we have the seed.
Sarah Li:Yeah.
Maria Elliott:And you'd be able to do the little rhyme to it. Oh, tinker, tailor, soldier. Say poor man, beggar man, thief. And however many you've got, that's what you would be.
Sarah Li:Mine was with clementines and pips and.
Maria Elliott:Yeah.
Sarah Li:Otherwise I'd have. I don't know what I'd have been on that.
Maria Elliott:I could only. I could only do one. So I never. She's always a tinker.
Sarah Li:So you're a tinker.
Maria Elliott:Yeah.
Sarah Li:Soldier, sailor, rich man, poor man, beg a man, thief. I wanted to stop at Richmond.
Rachel Thomas:Yeah.
Maria Elliott:That's what I would do.
Natasha Loveridge:Definitely.
Maria Elliott:Sorry. It was a childhood thing that came to me then. I'm sorry.
Sarah Li:But yes, the prune juice was a very good one. And then the nurses also got to know what I was responding to, so I.
Rachel Thomas:Okay.
Sarah Li:I had different. Like on dance. The Tron was very.
Rachel Thomas:Yes. Yeah.
Sarah Li:For nausea. Some of them weren't very good. Weren't as effective. I shouldn't say it's a good one.
Rachel Thomas:As effective. Yeah.
Sarah Li:And then I got into this habit of. Before I had, literally in the hospital room, as I was getting, before the chemo sort of went into my veins, I would have a.
Something to loosen, like. What do you call it, a drink. It was like an Alexa. Thank you.
Rachel Thomas:Oh, yeah. Like Fibergl type thing.
Sarah Li:Yeah. I would take a. Like a couple of drinks of a laxative.
Maria Elliott:Yeah.
Natasha Loveridge:Just.
Rachel Thomas:Oh, I know the one you're talking about.
Natasha Loveridge:Yeah, That's a good strong one I've been given.
Rachel Thomas:Oh, have you really? You suffered with that then, Natasha?
Natasha Loveridge:Yeah, twice. Have you got dehydrated? It's my own fault, really. After a long plane journey, I barely drank any water on the plane.
Rachel Thomas:Okay.
Maria Elliott:And.
Natasha Loveridge:Yeah. Ended up in hospital for two days. Not overnight, so two separate days. Severe compaction. Is that what you call it?
Rachel Thomas:Yeah. Impaction yeah. Yeah. Horrific.
Natasha Loveridge:It was horrendous. Nothing was shifting. Nothing shifted for about a week.
Rachel Thomas:Wow.
Natasha Loveridge:And ended up having to have suppositories.
Rachel Thomas:Oh.
Natasha Loveridge:As well. It was horrendous. Yeah. Yeah. So what happened was. I knew. Well, usually with ozimertinib is the other way.
Rachel Thomas:Yeah.
Natasha Loveridge:So it's usually diarrhea. So this came as a massive shock to me, but basically, like I say, I hadn't drunk enough water on the flight.
Got back and got a little bit of constipation at first, but then it just. It was horrific. So much so that all the muscles in my back were cramping. I couldn't feel the lower parts of my legs.
Sarah Li:It's really dangerous, isn't it? Constipation.
Rachel Thomas:Yeah, it can be.
Natasha Loveridge:Yeah. My hands went blue, my lips went blue.
Maria Elliott:Wow.
Natasha Loveridge:I was determined not to call it in.
Sarah Li:I feel like there's a theme here.
Rachel Thomas:Yeah, exactly. Soldier through.
Natasha Loveridge:I'll be fine. I'll be fine. Husband comes home. I'm still sat on the toilet from the morning.
Sarah Li:Oh, my word.
Natasha Loveridge:Because I was scared. I was scared of leaving the toilet in so much pain. And at one point I ended up. I think I screamed. I've got quite a high pain threshold.
And I did actually scream. So he phoned an ambulance, which maybe was a little bit drastic.
Rachel Thomas:Oh, I don't think so.
Natasha Loveridge:Anyway.
Sarah Li:Protective and loving, I think.
Natasha Loveridge:And they sort of said, oh, it's going to be four hours. And it was like, right, get in the car now. But I thought I was literally going to mess everywhere.
Rachel Thomas:Yeah.
Maria Elliott:Because, you know, the other side of the. Yeah.
Natasha Loveridge:So, yeah. Whiz down. They wouldn't let me go. Gave me lots of the laxido.
Sarah Li:Laxido.
Maria Elliott:That's it.
Natasha Loveridge:Yeah. Suppositories. Oh. I'll tell you what else I had.
Sarah Li:Sounds exciting.
Maria Elliott:Yeah.
Natasha Loveridge:Enemas. Had a few of those. It's so unhawful.
Sarah Li:It's very.
Natasha Loveridge:But then he went the other way. So that was one day and then I had to go back the next day because nothing was shifting. So I went back and I think I had maybe five or six.
And then they gave me like enemas. Then they gave me some to take home with me.
Maria Elliott:Wow.
Natasha Loveridge:So the five or six, I was over a period of time. But then he went the other way.
Rachel Thomas:I'm not surprised.
Sarah Li:No, I'm not.
Maria Elliott:With all that.
Natasha Loveridge:And so I couldn't leave.
Maria Elliott:Leave the toilet there.
Sarah Li:Oh, my God.
Natasha Loveridge:And I couldn't make it.
Rachel Thomas:That must make you feel tummy sore.
Natasha Loveridge:It's also the confidence thing. So I couldn't go to the shops because I was worried. I mean, I couldn't get from the kitchen to the toilet at one point.
Rachel Thomas:Oh, my goodness.
Natasha Loveridge:It was horrendous. And then. Oh, it's just. It was awful. But, I mean, after a week, everything sort of, like, settled down again. But I know that.
I know both you guys, as well have had all sorts of problems with diarrhea.
Rachel Thomas:Have you?
Sarah Li:Do you know what? I've not touched that. I feel like you're the one to.
Rachel Thomas:I'm looking at you now, Maria.
Natasha Loveridge:Hey, Maria's got a couple of stories.
Maria Elliott:Yeah, I've got some great stories. It usually happens. And so, like, you just get up and you've been to the toilet. Everything's done. You think you're okay for the day.
And I won't take Imodium because I don't want to. Other ones are available, obviously. I don't want to get constipation, so I think, right, I'll cope with it.
So, had a wee before you set off this walk. Go on this little walk, and then suddenly it just comes over you and you have to go. So I have pooed in the woods outside Gareth Southgate's house.
Sarah Li:Is that impressive?
Maria Elliott:Please, please forgive me, Gareth. He lives in this big mansion near where I live, and it's a beautiful place. And you're just walking along and I'm thinking.
And I was in a bright orange T shirt because I was walking a mile a day for Roy Castle.
Rachel Thomas:Right.
Maria Elliott:So it's just last October. Gare. If he did see me, I was.
Rachel Thomas:Gonna say, I wonder if you saw you on cctv.
Natasha Loveridge:This is the thing.
Maria Elliott:I can tell you exactly. There's this massive tree outside his house, and I had to sit down and do the biz. And David's on red alert. My husband going, there's nobody coming.
There's nobody.
Natasha Loveridge:Aubrey, there's somebody coming.
Maria Elliott:There's somebody coming. So.
Rachel Thomas:Yeah. Oh, my goodness.
Maria Elliott:But you've got to laugh, haven't you?
Rachel Thomas:Well, it's all you can do.
Maria Elliott:It's all you can do, you know? And, hey, that's life, you know, Brownies do it, guides do it. Everybody who's done it on a big walk. It's just a wild marathon, runners.
What's the name? That lady. Yeah, exactly. So I put myself up there with an extreme athlete.
Sarah Li:Yeah.
Rachel Thomas:But there we are.
Sarah Li:I mean, you were in front of the Indian. The Indian. The English coach. Right.
Maria Elliott:Of the time.
Sarah Li:Yes.
Maria Elliott:Well, no, he wasn't of the Time he'd left by then. But let's say he's very famous person.
Sarah Li:Yep.
Rachel Thomas:Yeah.
Maria Elliott:You know.
Sarah Li:You sinking Charles?
Rachel Thomas:Yeah.
Sarah Li:A bright orange top and a brown.
Maria Elliott:Yeah. So there's been a few instances like that. And you think you're prepared.
Rachel Thomas:That's the thing.
Maria Elliott:You think you are prepared. So my husband's gone mad with me now, so I have a little emergency bag.
So within that you have chapsticks, you have creams, I have an extra pair of pants, the wipes, hand sanitizer, paracetamol, Imodium. So you're carrying your whole life on your bag.
Rachel Thomas:But that's a great tip, though, Maria, to have an emergency bag.
Maria Elliott:Usually you pack on you. Yeah, I mean, I have it with me today.
Sarah Li:Brilliant.
Rachel Thomas:I think that's brilliant idea for people to have that because, I mean, in Covid, we were all wafting around with wipes and sanitizers, weren't we? So it's.
Maria Elliott:And it doesn't have to be massive and intrusive, it's just a small little thing and it's got all your emergency peace and mindset.
Natasha Loveridge:Whilst you're on that, you can get your little key as well, can you?
Maria Elliott:Oh, the radar.
Natasha Loveridge:Your radar key.
Maria Elliott:I've got one of them.
Natasha Loveridge:Because the amount of times when you caught short.
Maria Elliott:Yeah.
Natasha Loveridge:And you have it from. You can just get it online. So just Google radar key.
Rachel Thomas:Okay.
Maria Elliott:The blue badge as well.
Sarah Li:Yeah.
Natasha Loveridge:I don't think I even had to prove.
Maria Elliott:No.
Rachel Thomas:Did you? You just got one.
Natasha Loveridge:Yeah, I just got one. So anybody out there?
Rachel Thomas:Yeah. That's a good tip for people to have then.
Maria Elliott:It's good. I have used that a time or two. Especially if you're getting off the train and. Yeah. Straight to the.
Sarah Li:I use festival because no one wants to use festival.
Rachel Thomas:No, they don't.
Sarah Li:Like, I'll go to the. And also you also. So another side effect I find with Ozzy Mertin a bit. It's not a major one, but it's like I can't control my bladder so well.
So when I. I've heard of that, it's like, I need to go. And like, anything I drink, I just have to go.
Maria Elliott:We've had that because we checked in with each other, haven't we? Because we didn't thought, oh, my goodness, we've got really old all of a sudden and we've got no pelvic floor left.
Rachel Thomas:Yeah.
Natasha Loveridge:I literally wee everywhere.
Sarah Li:It's just like. And I'm up. I'm up in the night two or three times.
Rachel Thomas:Are You?
Sarah Li:Yeah, just needing to pee.
Rachel Thomas:Yeah.
Sarah Li:But you've got to keep your hydration up because obviously you need to flush.
Maria Elliott:Yeah, yeah, that's it, definitely. But it's ulcers as well.
Sarah Li:Really?
Rachel Thomas:Did you get that as well?
Maria Elliott:Yeah, I get that.
Rachel Thomas:And how do you deal with that?
Maria Elliott:Well, in my emergency bag I have the ulcer cream and I put it on and.
Rachel Thomas:Right, okay.
Maria Elliott:Try and get it as soon as possible. But sometimes it can just get out of control for other people. I'm very lucky.
It'll be like one or two spots you get down about miserable for a bit about it because it's really, you know, it really.
Rachel Thomas:Well, it must affect. Yeah, I was gonna say it must affect cake crisps.
Sarah Li:When I saw you two last, I had.
Maria Elliott:You did, didn't you?
Sarah Li:Yeah. And actually a top tip that I learned from another patient is to drink aloe vera juice.
Rachel Thomas:Really?
Sarah Li:A shot of aloe vera juice.
Maria Elliott:Is this like prune juice again?
Sarah Li:Yeah, but I can tolerate aloe juice.
Rachel Thomas:And is aloe juice okay to take with your tablet?
Sarah Li:Yeah. Are you sure?
Natasha Loveridge:I'd check.
Sarah Li:Oh, really?
Natasha Loveridge:Just check.
Rachel Thomas:I was thinking that because lots of our grapefruit patients would.
Maria Elliott:Seville oranges as well. Yeah.
Rachel Thomas:You can't have grapefruit.
Sarah Li:No, I know that.
Natasha Loveridge:I've just double checked the aloe vera.
Rachel Thomas:Are you saying.
Sarah Li:Come on.
Natasha Loveridge:My.
Rachel Thomas:My patients to.
Maria Elliott:You will have done, I'm sure.
Rachel Thomas:But pharmacist.
Yes, because, you know, we don't want to stop people having alternative and supplementary products and actually, you know, alternative products like your prunes etc for symptom control. But it is worth double checking that it doesn't interact with the. The mechanism of the.
Sarah Li:What makes you say.
Natasha Loveridge:Because I've looked it up. I just googled it and I can't remember if it was aloe or if it was something else. But I would just double check.
Sarah Li:I feel it because I'm pretty good at checking with the pharmacists.
Rachel Thomas:It's probably okay, I think just.
Sarah Li:I don't take it at the moment because I'm not getting ulcers.
Maria Elliott:No.
Sarah Li:So, okay, yeah, I took it.
Maria Elliott:So maybe it's allowed for a short term. But double check with your lcnses and things.
Rachel Thomas:Yeah.
Natasha Loveridge:Pineapple juice is supposed to be very good for Alzheimer's.
Sarah Li:I'm allergic to that.
Rachel Thomas:Just previous life.
Maria Elliott:Really.
Sarah Li:Yeah, I get. Yeah.
Natasha Loveridge:BC before cancer.
Sarah Li:Yeah, yeah, exactly.
Rachel Thomas:But I think one of the other things that I used to say to our patients with mouth ulcers because they can be unbearably Painful, can't they? Is if you get soluble paracetamol and you gargle and you wash your mouth with the soluble paracetamol and then swallow the paracetamol.
The paracetamol then starts to work on the tissues and will have more of a topical.
Maria Elliott:Yeah, brilliant.
Rachel Thomas:Impact on the pain and the pain control.
Maria Elliott:So I'll get some for my emergency bag.
Rachel Thomas:Put some in your emergency bag. Some soluble paracetamol.
Sarah Li:There's another one which is the infrared pen. You can just.
Maria Elliott:Oh, yeah, I've heard of that, actually. I've never used it.
Sarah Li:£15 On.
Rachel Thomas:On a certain site.
Sarah Li:Yeah.
Maria Elliott:Named after a river.
Rachel Thomas:Yeah, yeah.
Natasha Loveridge:Do either of you two get cramps?
Sarah Li:Yes, I'm getting them right now.
Natasha Loveridge:Yeah. So when we were sat here before, my feet were starting to cramp.
Sarah Li:Really?
Natasha Loveridge:Yeah.
Sarah Li:That's just started happening to me and I'm going to speak to my oncologist on Wednesday.
Natasha Loveridge:I've started to take magnesium on a night time.
Sarah Li:Right. I've heard lots of people take that for sleeping.
Natasha Loveridge:Yeah, it's brilliant.
Sarah Li:Is it good for cramps as well?
Rachel Thomas:Maybe just check with your oncologist because there are other medications they may be able to give you to help with that.
Sarah Li:Yeah, I've started drinking salts.
Rachel Thomas:Well, yeah, And I think the other thing is we all get fixated on drinking lots of water, but you need to replenish your electrolytes and keep your gut healthy as well.
Maria Elliott:Yeah, I took some of the. Very good. I got through having learned from Tash when she went on her holiday, I thought, right, keep your electrolytes up, Marie, keep them up.
And I did. I took some with me and, you know, I think that really got me through because I was in New York and It was like 35 degrees. So I kept.
Yeah, yeah, it really helped. It really, really did help. Yeah.
Sarah Li:That's a good tip, actually.
Maria Elliott:Just tiddly, because I. If I. Even if I've not say, like, I don't have any water today, that's immediately. I will tonight I will get cystitis.
Rachel Thomas:Wow.
Maria Elliott:That's how quick it happens for me.
Sarah Li:That's a side effect of a side effect, isn't it?
Natasha Loveridge:I get very sort of like sore down below as well if I don't drink enough.
Maria Elliott:We had toxic, didn't we?
Rachel Thomas:Oh, really?
Natasha Loveridge:So it's the skin conditions. So it comes affecting. Oh, yeah.
Maria Elliott:The lady.
Natasha Loveridge:Yeah. Your lady.
Rachel Thomas:The lady, yes. Yeah.
Natasha Loveridge:And his.
Rachel Thomas:That then. Because that must be. I mean, just. I can't. I can't imagine what that Must be.
Natasha Loveridge:Like they gave us some barrier cream.
Maria Elliott:Yeah.
Natasha Loveridge:We've both had it. And so the doctor, the oncology team gave us this barrier cream. But that actually made it worse.
Sarah Li:Did it?
Maria Elliott:It's okay if you put it on before. So say I was coming here and we're going to London. We're going to walk a lot.
Rachel Thomas:Yeah.
Maria Elliott:I would put it on.
Rachel Thomas:Right.
Maria Elliott:Without a shadow of a doubt. Because then you like you with your pre. And it doesn't happen.
If I don't do that and I go on a long walk, then something will get all sore and it's horrible.
Natasha Loveridge:Yes. Mine's more. If I don't drink enough water as well, really. But a lot of these side effects for me was when I first of all started.
Ozimerton in my body's almost got used to.
Rachel Thomas:And you've got your. Like, Marie, you've got your rescue pack. Yeah.
Maria Elliott:And the side of my bed, the things I have on there is amazing. You can just reach out and get it, you know, it's just how you adapt, like you say.
Sarah Li:Yeah.
Rachel Thomas:And how this has become your new normal. Has it?
Maria Elliott:Yeah.
Sarah Li:Yeah. I think. I guess we've all had sort of other treatments and one thing I would say about ozimetinib is the way that it allows us to live quite freely.
You know, like when I had chemotherapy last year, I had to change my whole schedule in like, you know, I. It's very hard to work. Whereas when you're on ozimetinib, you can kind of carry on as much normal. Normal life as possible possible.
We can travel a lot more. You don't have to be in the hospital. You know, every.
Maria Elliott:That is the beauty isn't it gives.
Sarah Li:You a really good. I'm so great quality of life. And you know, it's sort of the. The. It becomes a part of your everyday rhythm, really.
Maria Elliott:Yeah.
Sarah Li:Side effects come up and down. But I mean, is that saying.
Maria Elliott:Isn't it that cancer is not supposed to define you, but it kind of does.
Rachel Thomas:Yes, it does.
Maria Elliott:And you can't. You can't escape it. It's there. It's a presence in your life.
Rachel Thomas:Yeah.
Maria Elliott:And you have to change to adapt, like you say, to what you have to do every day. You know. You know you need it and if you don't have it, you think, well, consequences.
Rachel Thomas:Yeah.
Maria Elliott:You know.
Sarah Li:Yeah, the consequences are huge.
Maria Elliott:Yeah. So I think. Yeah. And. But it's very much not to frighten people again. I'll go back to what I said at the beginning.
It's in waves And I think it's how you're feeling that month, it's how you're feeling that day. What can happen if you're busy on your feet all day, you've not drunk enough and that's, you know, it's.
It's just adapting and every day is different.
Natasha Loveridge:And like we said, a lot of the time you can get sort of treatments anyway to counter these side effects. So not only did I get the rash, but I got really, really spotty.
Maria Elliott:Yeah.
Natasha Loveridge:I mean, I looked like a teenager, you know, with like acne everywhere.
Maria Elliott:It wasn't that bad. She felt it was. But your face was still beautiful.
Natasha Loveridge:I was wearing a mask at the time because we still had to wear masks. You couldn't see it, but it was really painful as well. But then they just. So I have a daily antibiotic for that.
Rachel Thomas:Right.
Natasha Loveridge:So, yeah, they're a treat because you can see now you're beautiful.
Rachel Thomas:Absolutely beautiful. And we've run out of time, really. Yeah. It's been amazing talking to you and thank you so much for coming and sharing your experiences.
It's been brilliant and I've really enjoyed it and it's been lovely meeting you all.
Maria Elliott:But thank you for doing this. Thank you. It's amazing, honestly.
Rachel Thomas:You're welcome. So that's it, guys. That's a wrap. We've come to the end of season one. I can't believe it. It's been amazing. Oh, you're emotional.
Maria Elliott:You fought so hard for it. It's wonderful. Honestly, I'm in awe of you. Thank you.
Rachel Thomas:I just say to people, we're trying to get funding for season two.
It would be brilliant if you could Write in to breathestrongassag.co.uk to tell us how it's helped you, because this will help us get some more funding. Also, do write in, continue to tell us about your experiences because that helps you feel not so alone.
I hope today has helped you have some reassurance that you other people are in this with you and you're not alone. So don't be scared to reach out. Talk to your lung cancer team. They're there for you and so are we.
So just to say thank you all, because we've had over a thousand downloads, we've been in 25 countries. I literally cannot believe it. So thank you to every single person that's listened. Just been brilliant for me.
Life changing for me as well, but I can't do this on my own. I know I'm here with my fantastic podcast team, but behind the scenes, that you don't see on YouTube is a brilliant team.
David has been with me from Orion Studios from day one. He's just been amazing.
Sarah Li:We love David. Thank you, David.
Rachel Thomas:We love you, David. And Angus from Orion Studios too.
I'd just also like to say thank you to Joanna, our marketing and Laura for putting us out on social media and helping us grow. To EGFR Positive uk, to hassag. Sorry.
Natasha Loveridge:And sorry, we're used to tears.
Rachel Thomas:And just a brilliant thank you to everybody to also to AstraZeneca because they believed in us from day one, gave us a grant which enabled us to do eight episodes of this brilliant podcast. And so thank you. Let's hope we'll be back for season two where I can bring all our crew back together.
And to those of you living with mesothelioma or lung cancer, your amazing network of families and friends, stay strong, breathe strong.
Sarah Li:Thank you, Rachel.
